Spring Break- Doin' Disney!

March 20, 2011
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Wow...the boys first cruise! Trey has asked for almost a year now to swim with the dolphins. What better way to get to the Bahamas than on a Disney Cruise? Of course when Trey actually got face to face with the dolphins he was a bit afraid (esp. to feed them and feel their teeth). But when it came to dancing with the cute dolphin, Trey was "game".

We all had such a great time, playing on the ship, snorkeling and bike riding on the island of Castaway Caye, swimming with the dolphins in Nassau Bahamas, partying in up at the Pirate Deck party,

and eating all day and night. The boys loved the kids area, the shows, the water slides, arcade, miniature golf, the basketball court and room service.
Mike and I loved that the kids loved the play area (which game us a little time by ourselves), the amazing shows done "Disney style", the huge rooms and of course...the food!.
I was so bummed that Disney wouldn't allow Trey to ride on the "Aqua Duck" with me (due to height restrictions) but he seemed to be ok with the Mickey slide because as Trey put it, "that was faster anyway"...love that kid and his easy going spirit! What an awesome time we had...like always, we wish we could have stayed longer!

Happy Birthday Granny!

March 2011

Befor Granny and Auntie left back to Minnesota for the summer, we made it a point to celebrate their Birthday's. Trey loves that we have so many celebrations to celebrate. Happy Birthday Auntie and to Granny whom will be 91 in April, I am so happy for the time the kids got to spend with you these past two months, we will miss you and love you very much...Happy early Birthday to YOU!

Surgery is Set

March 7, 2011
Due to the fact that I have yet to hear from BioMarin, I suspect that the Phase III Enzyme Replacement Treatment wont be happening anytime soon. It's getting harder and harder for Trey to walk and such a tight space in between his knees. Because I really don't know what to do and the FDA doesn't seem to work at lightening speed, I've decided to make the appointment for Trey's knee surgery for the end of June. So although the qualifications for being included in the Phase III study say that the patient may not have had any surgeries 3 months prior to beginning ERT I have made the appointment anyway Trey's 8-plate knee surgery is scheduled for June 28 in Minnesota. My thinking is that if ERT is announced before then we can always cancel the surgery. For now we are on the schedule and if by just plane bad luck that the treatment comes within those 3 months after Trey's surgery and he gets disqualified to be a participant, than that is a decision we will have to live with.

Button up's For Sale

March 2011

Whew-as I take a breath. Well it happened again...I sent Trey to school in an adorable outfit that just so happens to include a button up shirt. As I meet the boys after school at the bus stop I notice that Trey's shirt is buttoned to the top and think to myself #1, how uncomfortable that has to be and #2, who buttoned his shirt? I ask Trey who buttoned up his shirt and he tells me that Drake did it. So I ask Drake why he would button Trey's shirt to the very top and he tells me that Trey asked him to. I look back at Trey and he has this very sad look on his face. I ask him why he would ask Drake to do that and he tells me because his girl friend told him he looks "weirder" and points to his pecked chest. I was quick this time and had the perfect reply, "you tell her you aren't weird and that you have a big chest like Superman!" That brought a sweet smile to Trey's face but didn't do the "trick" indefinitely. I have tried to convince him to wear his button up shirt's but he will have nothing to do with them. Oh well, I believe this is one of those occasions when you have to decide to pick and choose your battle and this is definitely not worth making a battle out of. Trey, you are my Superman -inside and out!

I Wanna Be Just Like YOU!

March 4, 2011

March 4, 2011
Trey adores his big brother Broc and vise verse. Drake helps Trey the most but also treats him more like Mike and I do (with kitted gloves). Broc on the other hand plays with Trey rough and tough, with no reservations and I think that's one of the reasons Trey is so drawn to Broc. At Broc's 9th birthday party he and his friends played football in the park most of the time but once again when it was time for cake and opening presents...Trey was right there up front to help open the presents, blow put the c
andles and lick the bottom of each candle as he helped pull them up from the cake. It's so cute...Broc likes the Oregon Ducks, so does Trey. Broc likes the color green, so does Trey and if Broc doesn't like a certain food, neither does Trey. Thank you Broc for being the very best big brother to Trey and for including him when you play, for always having him on your team and for being one super cool person! If you were my big brother I'd want to be just like you too! Happy Birthday my little Cherub!

Growing Pains

Well the day that I've prayed for strength for since Trey's diagnosis finally came and wouldn't you believe...I was "mush" and failed miserably! Five minutes before the bus and Trey's asks me what I eat to make my bones grow. I have him on the counter, tying his shoes when I am taken back by his question. I look him in the eye only to see these huge crocodile tears forming. I am at a lost for words and instead of coming up with a great answer and digging deep to find the strength he needs me to have in this moment...I too begin to tear up. He continues with explaining to me that the kids at his school aren't nice to him and that they call him short and little and that he doesn't want to go to school any more! I give an acceptable answer, explain that he can't quit school, dry the tears and off to the bus stop we go. As luck would have it the questions came again as we waited for the bus. This time Trey asked how my bones grew so big and without giving me a chance to reply he said he had bad bones and that he didn't like his bones. I have no idea how I got him on the bus that day because it took all that I had to hug him and hold him to keep him out of harms way and to try to make it all ok.
As soon as the boys got on the bus, I jumped in my car and drove up to school to tell Trey's teacher about his concerns...I broke down in tears but felt so much better letting her know how Trey was feeling and hearing from his teacher that she feels that the kids are extra nice to Trey and we both agreed that the height comments are just 5 year olds' voicing their observations with no harm intended. I was so relieved to receive an email in the middle of the day from Trey's teacher saying that he was having a great day, that she expressed Trey's concerns to the other kindergarten teachers and that the kids were being extra, extra nice to Trey today.
How do you brace yourself for this? What are the right answers? What answer is "enough"? I am so sad to think that this is just the start of the rest of Trey's life and all the let downs that will come with the realization that his dreams and wishes will have to be re figured as he won't be able to play sports like his brothers nor will he be able to be a police man like his daddy...heartbreaking to say the least.


Goodnight sweet heart, it’s been a long day.

Tap Out!

This was the funniest thing...my mom taught the boys how to "leg wrestle" and Trey had the best time with it. If he couldn't beat you with his leg he would use his entire body to put your leg in an "arm bar". I believe he really did beat his Grandma and great Aunt. We were all laughing so hard at Trey's determination to beat everyone...not to mention the strength this mighty might has~ you go boy!

Go Dog Go!

Trey's very first field trip! I was able to go (although not picked as one of the 5 volunteers)to assist Trey, #1 with the bus ride (no seat belts on this bus) and #2 with the walking. The field trip was to see a Dr. Seuss performance of Go Dog Go! Trey loved every second of the trip from riding on the bus with no seat belt,
to the picnic lunch outside but most especially when his dad surprised him and showed up to say hello (Mike works around the corner from the theatre and took his lunch break with us).
The theatre asked that we didn't take any pictures inside but here are a few of Trey's first school outing adventure!

Happy Birthday Grandpa

As with any celebration, Trey has to be front and center when it comes to opening the gifts and blowing out birthday cake candles. And true to form...
here he is, as close as he can possibly get...helping my dad blow out his birthday candles on his cake and still right beside Grandpa as he opens the D-Backs shirt from our family.
He really is the very best helper and will even lick the bottom of the candles clean if you'd like too!

LOVE on Valentines Day

Mike and I were both lucky enough to be able to volunteer in Trey's classroom on Valentines Day (the volunteer list fills up very quickly with Trey's class). When I asked Mike if he would like to spend his Valentine's Day off in Trey's classroom, he said he couldn't think of anything else he's rather be doing than spending it with 23Kindergartners-haha! Mike was in charge of M&M BINGO and of course made lots of fun out of every picture he called. It seems as though Trey grows 2 inches taller each time his daddy shows up at his school - he loves having Mike around! And I love seeing the interaction between the two of them and the "reaction" of the kids when they see Trey's dad...I'm sure it makes them wonder-with Mike being 6'5" and very, very tall-and Trey being 3' tall (on a good day) and so, so short. Watching Trey grasp the concept of Valentines card's as he read each name and passed out each one with a smile and bit of curiosity as to what his might be filled with was unforgettable for me.
Happy Valentine's Day my little Angel - you've most definitely hooked your Mommy and Daddy's heart!

Christmas in February

We were very blessed to have my aunt bring my grandma (aka Granny), the boys 90 year old great grandma out the Arizona to enjoy some beautiful weather while their hometown in Minnesota was pummeled with snow storms and blizzards. Since we had missed Christmas with my mom's side of the family, we all decided it would be fun to celebrate with them up North with a Christmas in February. Trey was right there to help Granny open her presents has she was showered with gifts from everyone.
As she said, it is a gift enough to be able to be around her great grandchildren and watch them play so nice together. We all exchanged names and bought one gift to open as well. Emma drew Trey's name and wouldn't ya know, Trey got football cards! He was smiling from ear to ear in excitement! We all enjoyed beautiful weather, a wonderful Christmas dinner and each others company!

Football at it's Finest!

Back in November Trey begged and begged us to let him play flag football like his brothers. As luck would have it, Trey and I ran into our t-ball friends and wouldn't ya know...Coach Dennis was going to be coaching a flag football team that season. Now that the season is over and all went well, I am so happy to have been able to allow Trey the experience.
Trey played almost every play on offense as the center-he hiked the ball play after playafter play. Our family was so supportive
(even Granny from Minnesota was able to enjoy Trey in action). The team was a pure joy and once again Trey received pictures, a medal and a uniform -everything to make him one happy little boy. A huge thank you to our family as well as the parents and coaches for allowing Trey to be a member of the "Colts" team and for a great time-once again.

Hoops with HopeKids

Once again, HopeKids provided those kids with a life threatening illness a day to remember. The boys got to participate in an afternoon clinic with the Phoenix Suns gorilla as well as a few Sun's Alumni. Trey did so well and was very independent as he worked with Cedric Ceballos, Tim Kempton and Alvin Adams on some fancy drills.
To add to the day's fun, our MPS friends Justin and Kianna (and mom Darla)were also there. We are so fortunate to be blessed by such an incredible organization-thank you HopeKids for the HOPE and the Hoops!

My 1st Science Fair

Trey's very first Science Fair with his elementary school was such a blast for him! He was very proud to show me his Science Logbook and to tell me all about their class project on magnets. I loved seeing his face as he brought us over to "his" classes table. Visiting Drake and Broc's class projects as well as participating in all the science experiment's made Trey feel like it was "his school" too...as opposed to being the little brother who tags along to all of the school events. I can't believe that kindergarten is more than half over!

Yes, we have Snow!

Jan. 2011

The boys had so much fun playing up North in the snow this past weekend but weren't "in love" with wet feet and hands...guess I need to invest in some real snow gear. Taking turns sliding down a very steep hill for the older kids and a not so steep hill for Trey and Emma was the excitement for the weekend. Sleeping in the loft all bunched together and staying awaketill all hours of the night are memories made, always to be remembered.

Happy NEW Year!

Another year of Mike working the Tempe Block Party and me and my three little men bringing in the New Year at my mom's house. My wish for the new year is that not only a treatment but a cure for MPS will be found...I was always told to dream big! I am so thankful for my family and the blessed 2010 we shared together and can only hope for more of the same in 2011.
A picture of the boys and their cousins at grandma's getting their sparkling cider ready to toast to the the New Year...they all stayed up past midnight this year (lucky me and my mom-haha).

A North Pole Experience

December 2010
The North Pole Experience was an Experience and so much more! Dad and Gloria accompanied the five of us to Greer, AZ for a winter white outing. Mike and I surprised the boys with their "Golden Tickets". We picked them up after their last day of school before the break, handed them their tickets, meet Grandpa Steve and GiGi and off we rode. The ride was so much fun! We got to see lots and lots of snow, majestic views as we cut back and forth through the mountains, snow boarders and even some Christmas light's that adorned the cabins along the way. The "experience" that the folks up in Greer put on for the families was so magical for the boys; they got to see Santa's workshop, help the elf's build toys,
decorate and eat some homemade Christmas cookies, listen to a book read by Mrs. Clause and attend elf school taught by Alibaster the head elf as he told all about all they do up at the North Pole to get ready for Christmas Eve.

And of course the kids got to sit on Santa's lap to tell him what they wanted for Christmas. Broc wanted football cards, Trey wanted a red back pack with Santa on itand Drake asked for a cure for his baby brother...as you can imagine, Santa was extremely moved by Drake's wish (as were Mike and I Our entire weekend was full of family and fun
and couldn't have been a better way to bring the Christmas spirit into the boys hearts!

Christmas Kinder Style

Spending time in Trey's kindergarten classroom is always a fun experience for me. I volunteered to help with the classroom Christmas party and Trey was in rare form (which he always seems to be when I'm in his class). We played Christmas BINGO, made candy cane reindeer and bagel snowmen and a whole lot more. Here is a picture of Trey showing me (and showing off) that he didn't win in BINGO. With a lot of sugar in us...Christmas break here we come!

2010 Christmas Card

HEAR the Sounds,
SEE the Magic,
SPEAK the Love of Christmas
The Lane Family, 2010

The Grinch

December 2010
My cousin Julie so graciously offered our family tickets to go see the production of "How the Grinch Stole Christmas". We were all so excited to see the Grinch! The magic of the Christmas season seemed to add to our enthusiasm. The show was amazing as expected but what was more enjoying was seeing Trey's face light up when the Grinch was on stage! Trey talked about and asked a million questions about the Grinch for days after...how fun to be a kid again! Thank you, Thank you, Thank you Julie for these tickets, you've made the start of our Christmas season a very Merry one!

Raven's Big Win!

November 2010
Broc's flag football team won the league championship and Trey was their biggest fan! Our entire family had such a great time this football season cheering on both Drake and Broc's team but Trey seems to get even more out of it; he makes lots of new friends on the sidelines, is always the team's favorite buddy, receives a team shirt from each of his big brothers teams, participates in all the after game snack's, team tunnel, and all the team parties. And if Trey is lucky he will even get the very quick opportunity to hold his brothers trophy after the big game. Trey is so happy to be included in every aspect of the boys teams!

And to top the day's activities, our family was graced by the presence of the boys' buddy Caleb! Caleb is recovering fantastically from his tragic car accident back in July 2010. It was so heart warming to see the boys pick up where they left off and to see the excitement on each of their faces to be together again. Thank you Coach Randy for bringing Caleb to the game that night...couldn't have asked for a better ending to a super day!

In Awe of #10

November 2010

How cute is this? So my dearest friend, Carrie called me on her drive to our part of town to invite the boys and I to her oldest son, Darrien’s’ freshman basketball game as they were playing against a high school team right down the street from us. As luck would have it, we were available. Drake and Broc were very excited to watch the high school boys play but Trey was elated to get to see the “big guys” in action . We pointed out Darrien (who became, no name-only #10 to Trey) right away so that he could keep track of the “big guy” we knew. The best part is after the game Darrien’s coach allowed Trey to come back to the locker room hall to take a picture with the team and even get autographs! I don’t know who was more excited, the players to be asked for their autographs or Trey to be able to get so close to #10 (Darrien) after the game.

Sponsor A Child for A Cure

October, 2010

The MPS Society has held their 2nd annual “Sponsor a Child for A Cure” Walk/Run. This year the program doubled in size which means it raised double the funds to continue important research programs and well as to help spread the word about MPS and related diseases. Trey’s grandma Joyce and Papa John sponsored a runner for this year’s event. Leslie, age 26 from Santa Ana, California was Trey’s assigned runner. Upon completion of the event, the MPS Society sent John and Joyce a very nice letter thanking them for their participation in the program, along with information about our runner (including her time in the 5K), a medallion of courage (of which they gave to Trey) and a photo of Leslie on the day of the event wearing a picture of Trey on her shirt in honor of her efforts for the MPS Society and for Trey.
Thank you Grandma Joyce and Papa John for sponsoring this event for Trey! This is definitely something we would like to contribute to as well next year.

For Trey, Love Mommy

Tonight watching the AFC Championship a special interest story was told about what seemed to give the Jets their "spark" against the Patriots last week. #90, Dennis Byrd came before "his" team to remind them of his tragic helmet to helmet hit that initially left him paralyzed in 1992. As part of his touching speech, he said something that I want Trey to hear when he is old enough to comprehend.

"A man has a body, mind and a spirit. There are times in a man's life when his body will tell him he can't continue on,where his mind will tell him that the task set before him is too hard to accomplish. Those two don't matter, it's a man's spirit that will tell him you can do it and will make the mind and body follow"

Through the tears I made sure to write this down for Trey to add it to his blog so that will one day when he comes to today's date in my entries, he will read this and it may possibly give him strength, the strength that the entire Jets team walked away with last week to push forward and fight on.

still here...

Hello to everyone who's checked out Trey's blog since Halloween...we are not M.I.A. just S.O.L...our computer "blew up" and we have lost all email addresses, including our "Trey's Treasures" addresses. We are hanging onto hope that a friend of Mike's may be able to recover all of my photos and addresses...cross your fingers!
Happy New Year~The Lane Family